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Heliotrope's vestibular migraine journey

#1

I thought I would start mapping my progress so far. Last edited 24 March 2019.

First acute balance issues: intermittent episodes since 1998.
Number & duration of acute phase(s): worst two episodes lasted a few days; second worst last three hours; others last about an hour. Have lost count of how many altogether.
Any suspicious physical event/trauma leading up to dizziness: none.
Start of chronic phase: became more regular in mid-2015 when I started to commute 100 km a day to work. Stopping work didn’t set the clock back.
Age at chronic onset: mid-fifties.
Started medication: approximately August 2015.
Stopped medication: -
Number & type of consultants seen to date: two GPs, one ENT, one neurologist.
Diagnoses received: BPPV (the person who diagnosed this didn’t even examine me for the basics); labrynthitis; vestibular migraine.
Medications used successfully for MAV: pizotifen - partially successful, but caused weight gain.
Failed medications for MAV: sibelium.
Non-pharmacological treatment tried which helped: keeping hydrated; adequate sleep; increasing protein intake; trying out tai chi for balance and strength (results yet to be shown).
Non-pharmacological treatment tried which didn’t seem to help : BPPV prevention exercises (they do not help if one doesn’t have BPPV).
Dietary triggers identified: possibly yeast. It looks to be a factor, but okay in small quantities.
Other known triggers: motion; fatigue; sensory overload; stress; seasonal transition (so, the month before winter and the month before summer are usually full on); episodes are more likely to happen in the morning; air pressure over 1020 hectopascals.
Any hearing loss in either ear: -
Persistent or intermittent tinnitus and character: -
Other chronic conditions I’m suffering from: epilepsy; hiatus hernia; GERD.
Medication I’m taking for other conditions: lamictal; tegretol; somac; Nizatidine; vitamin D3.
Any personal history of migraines: vestibular = yes; classic migraines = no.
Any family history of migraines: no. I’m always the odd one who gets weird and rare things.
Any history of ear problems: no.
How did friends, family, and doctors react to your symptoms?: friends and family generally supportive, but found it hard to understand what I was describing; ENT not particularly interested in the whole thing, barely asked any questions, but he sent me off for a lot of inconclusive tests; neurologist was fantastic and asked lots of questions - he was the one who made the diagnosis; I know that some work colleagues didn’t believe me.
Falls: three falls and two faints. Ugh.

In October last year, I had a holiday and I pushed myself too much. It pays to rest when one is tired. It took me a month to feel better again.

I’m currently celebrating being free of vestibular migraines for almost 4 months(as of 24/3/19). I can’t pinpoint an exact cause for this. I live around the triggers a bit, but this behaviour usually would not bring a nil result. Not complaining. I’m using this time to focus more on self care and to be observant about what works. Every non-wobbly step feels like a minor miracle.

I’ll keep adding as I think of things. I need to work out more about triggers and patterns.

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#2

Hi @Heliotrope
This is very interesting and easy to follow - I might try to do something similar. I am taking Pizotifen and have put on about 5 pounds - did the weight come off when you stopped taking them? Jan

#3

Hi Jan

Heliotrope’s following the format @turnitaround has asked people to follow with Personal Diaries. A summarised diary version to avoid people having to plough through lengthy documents to find relevant info. Only started recently so you may have missed its arrival. It’s good if it encourages more people to record their story for posterity as it were. Helen

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#4

Ah yes, I remember that now. It is certainly an effective format! I must get around to doing one.
Jan

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#5

Hi

An interesting read. Can I assume you’ve been three months free on no meds at all? If so, goodfor you. That’s amazing. Thinking triggers - hormones? Thinking culmulative triggers: hormones, plus I read anybody middle-aged and upwards on more than a couple of meds for different reasons stands much increased chance of dizziness over general population. And I’ve always assumed illness will always play on an existing weakness ie maybe you have a double wammy for dizziness from MAV. Just thoughts. Interesting you do Tai Chi. I did it for four years before chronic MAV. Haven’t been able to do much since, certainly not as I would like. Helen

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#6

Thanks for following the format @Heliotrope

For others: the format is described in detail in the Category about Topic.

#7

Hi Jan. I’m still taking pizotifen. I suppose it helps with being migraine free, but it’s never worked 100%.

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#8

Hi Helen
Thanks for responding. Sorry if it was not clear - I’ve been taking pizotifen for three years without stopping. Before now, it probably reduced the number of episodes and the severity. The dose hasn’t changed for ages. I’m still carrying the weight. I lost five kilos last year, but when I physically crashed around October and November, I was ravenously hungry and put it all on again. I was unsteady nearly every morning in November! I will have to have another try at getting the weight down.

I hadn’t considered hormones. I barely had any obvious menopausal symptoms, but perhaps the hormones are part of the story. I’m sure that the neurologist was thinking about life stage, as I seem to recall a comment about age although not hormones specifically. (They sort of go together.) There was a big emotional event as well around the time I was fifty and there were some episodes around that time. So my body was probably under a lot of stress.

I’ve considered tai chi for a long time, but only felt I could start this year. Trying to do some extra good to myself while I’m feeling okay. I’m not surprised that you can’t do it right now. Hoping you can get back to it eventually.

#9

I’d eat my hat and yours if hormones isn’t involved. Most consultants say they see more middle-aged women with MAV than other age group, i had my first vertigo attack within months of my last ever period. Although it was years before I made the connection that’s more than coincidence surely. Not that that ‘cures’ anything but it does perhaps help to make some sense of things. Triggers are cumulative so emotional trauma and hormones and a certain genetic predisposition and BAM.

I’ve said the same many times. I’ve been fine apart from hot flushes, and the MAV. Couldn’t see what all the fuss was about.

Sounds like the Pizotifen has been serving you well. Got it to manageable levels for you. Great. I think breakthroughs seem inevitable. Apparently it has been known to eventually burn itself out. Although with fluctuating hormones might seem we’ll have to wait until they decide to settle then who knows.

I’d see the November unsteadiness as being the ‘migraine’ attack breaking through. Do you. I don’t get the headaches ‘only’bad vertigo in its place. Guess that’s why. What are you missing that stops you ever being 100%. I ask because I’ve - very casually this, not done a straw poll or anything - most people on Pizotifen seem to take another drug too for success.

With the Tai Chi I found whilst I was still 24/7 dizzy I could do Tai Chi walking, Brush n Push including 90 degree turns (my own version of VRT incorporated that) alot of the time. Since my balance has settled, that’s about the only thing now that throws it out again. I can understand why. It’s the shifting weight in TC Walking, so different from the way one normally walks. Obviously head turning left and right, ie think Reeling in The Silk, or anywhere ‘extreme’ is dependent on how acute you are at the time. When I have a clear days it’s all achievable. Tai Chi has great health benefits, certainly helps with keeping fit, and coordination but it cannot restore lost balance.

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#10

Hi Helen,

Thanks for all of your thoughts. :slight_smile:

I did have some minor vestibular symptoms in my late thirties, but nowhere near as big as what’s descended around the menopausal years. As I’ve had a hysterectomy, exact date of menopause is a bit vague. I haven’t even had a hot flush, but there are other changes that indicate the big M has happened. My body may not be finished with the hormonal changes, although I’m 58 now. I agree that hormones must be part of the deal for me.

The illness/unsteadiness around November was definitely migraine activity triggered by being over-tired and seasonal factors. I’ve never had a painful one, but I get vertigo, loss of balance, and the rest.

I’m doing so well, so will wait and see about what to do next. It is encouraging to hear that MAV can burn itself out, although, I accept the likelihood of recurrences. It’s a lot easier to think objectively about it all whilst symptom free.

Thank you again.

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